Month: March 2018

Your cord blood may particularly valuable for Devan, especially if it is from a child of mixed South-Asian/European heritage.

UPDATE: It is possible that we may, if necessary, be able to use privately banked cord blood from mixed S. Asian / Caucasian individuals. Please enter your contact information here if you are interested in donating privately banked cord blood. Please note the following:

We cannot use just a portion of existing privately banked cord blood.

Due to the time constraints, we will not be able to reply to individuals with non mixed-heritage cord blood. We thank you ahead of time for your generosity.

However, if you are pregnant with a child of mixed South Asian / Caucasian heritage, and are interested in donating your child’s cord blood, please read below for information on donating the cord blood after delivery. There is no risk of harm to either the mother or baby by collecting cord blood, which is normally discarded.

USA

If you would like to donate the cord blood from a child you are expecting, first please note the following:

You must not be more than 34 weeks into the pregnancy.

You must be delivering a single baby

It must be an uncomplicated pregnancy.

You cannot donate if you have had hepatitis or HIV, or if the mother, the father, or a sibling of the baby has had cancer.

If you happen to be delivering at a hospital that already collects cord blood for the public registry,

please contact the public cord bank that works with your hospital, and discuss this with your obstetrician. These hospitals have staff dedicated to this purpose. However, due to limited funding, very few hospitals in the USA have public banks.

Here is a listing of hospitals with public cord banks that contribute to the national registry:

If your hospital is not listed, please enter your contact information here to inquire about the possibility of arranging to send a cord blood donation to a public bank. We apologize that we may not respond to every offer, as we must prioritize the donations with the highest potential of match. We thank you ahead of time for your generosity.

UK

The UK has an excellent Cord Blood Bank and Database, however, only 6 hospitals in the UK are allowed to publicly collect and store cord blood. If you do not give birth at one of these hospitals, you can arrange to privately collect and bank your cord blood for your family’s use. Due to very strict regulations on the handling of human tissue, it is not possible to deliver at, say Birmingham or Manchester, and have the cord blood collected and sent to one of the NHS Cord Bank hospitals. The only exception to this rule is where a sibling may be in need of the cord blood.

The cord bank database is made up of 60% Caucasian and 40% non-Caucasian donors.

NHS Hospitals collecting and storing cord blood:

-Barnet Hospital (Hertfordshire)

-Northwick Park Hospital (NW London)

-Luton & Dunstable Hospital (Bedfordshire)

-Watford General Hospital (Hertfordshire)

-St Georges Hospital (London)

The Anthony Nolan Trust also operates its own cord blood collection and storage facility at King’s College Hospital, London

We all have 10 Human Leukocyte Antigens (HLA) markers, 5 from our mother and 5 from our father. Being 1/4 South Indian and 3/4 Northern European, Devan is difficult to match.

In general, people with any non-Caucasian blood in their backgrounds are harder to match for a bone marrow or other kind of transplant. This is why you need to register if you come from an ethnic or multiethnic background. The UK NHS system has done a better job of getting their database to reflect their population — for instance, 40% of their cord blood database is ethnic minorities and mixes. But statistics for the US Bone Marrow Registry show that a lot of work remains to be done to give everyone better representation in the database.

National Registry of Potential Marrow / Stem Cell Donors

Race

Donors
Registered

% of
Total

Number of
Transplants

Asian American Total

532,006

7.2%

531

– South Asian

139,460

1.9%

25

– Filipino (Philipino)

43,437

0.6%

55

– Japanese

32,639

0.4%

112

– Korean

67,913

0.9%

51

– Chinese

84,284

1.1%

56

– Other Southeast Asian

36,400

0.5%

49

– Vietnamese

16,967

0.2%

11

– Unspec. Asian/Pacific Islander

95,093

1.3%

172

– Multiple Asian/Pacific Islander

15,813

0.2%

876

Caucasian

5,408,623

73.0%

14,104

Black or African American

559,972

7.6%

876

Hispanic

386,549

5.2%

766

National Hawaiian/Other Pacific Islander

10,682

0.1%

21

American Indian/Alaska Native

83,739

1.1%

85

Other

30,072

0.4%

209

Multiple Race

219,367

3.0%

–

Declines

43,696

0.7%

265

Unknown

132,606

1.8%

970

TOTAL

7,407,312

100%

17,843

If you are of Caucasian descent the likelihood of your finding a marrow match is 80%

If you are of minority descent your likelihood of finding a match (all minorities as a group) is 30% or less.

If you are of a smaller ethnic group, say Vietnamese or Japanese, your odds are even lower then that.

Here’s some info on how to schedule a marrow drive. It’s really easy to do!!

1. Find a location where you can set up a couple of tables and a few chairs. Location is preferably indoors or at least covered. It’s best if you know if a large gathering of some sort is going to happen where a lot of people will turn up. An office, school, university are also all good places. Make sure you check the venue first and ensure the organizers are giving you a table.

2. Contact the appropriate agencies for your state / county / country and set up a date and time with them.

In the UK, Anthony Nolan will send a dedicated person if you can pre-schedule 50 people. If you are planning on asking a large number of people to just show up at a particular time, you will need at least 3 people to help you: 1 to welcome and pass out the registration paperwork, 1 to look over the paperwork and ensure it is filled in properly and that the person is indeed eligible to donate (age and certain health issues can preclude you), and 1 to get the slide sample. Devan has a dedicated bone marrow drive coordinator at Anthony Nolan. Please contact for more info.

3. Campaign about the drive in the local community. Send out emails, put printed flyers and posters in high traffic areas. See PDF flyer below.

4. Have a few people help you during the drive when people show to sign up. Remember that if you choose to do a drive at a social event where people are eating and drinking, you need to have people drink water / rinse their mouth before they give their sample.

5. During the drive, talk to interested people and explain the situation to them.

“You might have heard about Devan in the press or online. He has leukemia, it’s a type of blood cancer. The best hope for his survival is to find a bone marrow or cord blood donor. But the chances of a match are so rare, mostly because there are so few multiethnic people in the database. That’s why we are doing this drive right here. So we can sign up as many POTENTIAL donors as possible. The registration process is extremely simple. All you have to do is fill out a form and give a sample of your saliva. It will take 10 minutes of your personal time but you could actually save a child’s life. There’s no cost involved. It’s a pure donation. All it costs is a little bit of your personal time.”

Some Handy Facts to Tell People

– If talking to someone who is Chinese or Indian – While both these countries have huge populations, neither has a bone marrow registry, so when a Chinese or Indian child gets sick, they have to come to the global directory and find matches in Western countries. When a Caucasian looks for a match, they have about 15 matches. Those from ethnic or multiethnic backgrounds have perhaps 1 match or no match at all.

– This can happen to anyone at any age and god forbid you should get into a similar situation. Then you or a loved one would depend on this registry.

Even if you are not eligible to become a marrow donor, you can assist by making a financial donation.

The total cost to add each member to this life-saving registry is about $100.00.

All donations are tax deductible. You can make your donation online at Devan’s Be The Match fundraising page.

Be The Match relies on our support to collect contributions from people like us so that it can further its mission. Proceeds will help add more potential donors to the Be The Match Registry. We hope you’ll consider making a contribution today.